Well, Happy World Down Syndrome Day anyhow : ) Hunter asked to wear his Buddy Walk shirt "the one with Ella's face on it," to school today after hearing me tell Chris on Sunday that it would be Ds day tomorrow. I asked him if he was sure he wanted to wear that one, he could always just wear the one that says Buddy Walk. (He is very against anything that may be girly or that he could possibly get made fun of in, and I thought perhaps wearing a picture of a girl on your shirt could lead to that.) Hunter says "well all of my friends think that my sister is really cute," I said okay...but if anyone asks you why you are wearing it you can tell them that it's World Down Syndrome Day and that your sister has Down syndrome. He says "Uh, yeah. They all know that already." Oh...didn't realize it was a topic of conversation amongst 1st graders : ) I sure love my boy!!!

Thursday, March 10, 2011

Just a quick post to let everyone know that Ella's surgery on her eyes this morning went well. We are home and she is resting and I am holding her arms down. She got to one of her eyes earlier and it made blood poor out of her eye, it was gross and scary looking. Ella is a bit aggitated, tried to get up and walk and kept falling. I don't know if that is from her eye's being blurry/and or double vision as they said could happen for the first week to two weeks or from left over anesthisia. Either way she looks pitiful. But as is her style she is a brave, strong girl!

Also, I posted this on Facebook but have to share, yesterday I was trying to prepare Ella for the surgery and said to her "Ella we have to go see the doctor very early tomorrow morning," to which Ella replies "aww dammit." My thoughts exactly. Gotta love it!

Happy happy happy birthday to my Hunter. You are the most amazing son a mom could ever wish for!!

Tuesday, March 8, 2011

We have been pretty busy around here! Two and a half weeks ago Ella hurt her foot. Hunter set up his own little obstacle course in the living room and of course Ella couldn't resist doing what big brother does. Hunter was running and jumping over their little chair/couches, so Ella would run up to it, stop, and then try to kind of leap over it. They've done it a million times. So Ella leaps over and falls onto her left foot and starts bawling. (Let me quickly remind you that this child has the highest pain tolerance....so high that it is down right scary.) I figure she most have rolled her ankle a bit. Well, four hours later she is still saying it hurts and when I try to have her stand up she crumples to the ground crying and screaming. So, hubby comes home from work to stay with the boy and off Ella and I go to the ER.

The doctor that we see at the ER tries to convince me that Ella is faking her injury, because it is not swollen or bruised and when she is sitting it doesn't seem like she is in any pain at all. Despite my attempts to explain Ella's freaky pain tolerance issues and informing her that if Ella was fine her little room would be destroyed and Ella would be roaming the halls, the doctor still felt like everything was fine. I convinced them to at least do an X-ray. The doctor asks Ella where it hurts and she points to her big toe, so an X-ray is performed on the top of Ella's foot. Not her ankle, just the top of her foot, because that is where my 4 year old pointed. OK. So that came back fine and the doctor says to me "don't worry, parent's bring their kids into the ER all the time because they won't do stuff for them at home." As if Ella would play a game for 4 hours, a game mind you that has no reward. Fine. We go home. The next day Ella does not walk AT ALL. She literally crawls around the house the entire day. The day after that Ella crawls around until about 6pm then takes a few steps, limping and saying owie. Then on Thursday she is walking pretty well, with a noticeable limp, but walking, (Thursday ended up being a snow day so she didn't go to school.)

The following Tuesday I go to pick Ella up from school and the teachers informed me that Ella had been limping and tripping and falling all day. I went back and talked to the PT and she and I both felt that Ella's foot should be checked out again. Her foot was a little puffy. So Wednesday I take Ella into her pediatricians office. They order STAT X-rays of her tib/fib, ankle and foot. Five hours later the doctor calls me. She asks me how Ella's foot is and I tell her she is still limping and tripping. She says that the X-rays all look good but she consulted with some of the other pediatricians in the practice and they all think that Ella should go have some blood work done. Um, what? She says to rule stuff out. I say Cancer? She says "yes, Leukemia." Insert nausea and sobbing. Then she says "can you get her to the lab like now?" I get Ella to the lab rather quickly and look at the script the doctor sent over and it says STAT STAT STAT on it, which just added to my anxiety. We left the lab at 3:30 and I just knew that we wouldn't hear anything back that night, and therefore knew that I would not be sleeping at all. Surprise surprise the phone rings at 6:30, it's the doctor's office. I'm thinking this canNOT be good. The nurse says that 2 of Ella's tests came back and her numbers could not be more NORMAL!!! I cannot tell you how fabulous that felt. Phew. We still didn't know what was going on with her foot but I didn't really care because she didn't have cancer!! We decide to try wrapping Ella's ankle for a while and see if that helps, and it does, so Ella's PT called downtown and looks like we are getting more orthodics next week so that we avoid another injury.

Last Thursday was our big meeting with the school to discuss Ella's placement for next year. The school had told me that Ella could not stay in preschool next year, that because she would be 5 before Sept 1st (her b-day is Aug 30th) she would not be able to go back into her integrated preschool program and would instead have to move on to Kindergarten. Well, that is most definitely not what I wanted for Ella. I have so many reasons why I wanted her to stay in preschool, but to me it was just so logical that a child her size, with her birthday, and with her delays that she should not move on to Kindergarten. Anyhow, so we've been gearing up for this big battle with the school district and it was the day of the big meeting and again I was so nervous. We get to the meeting and there are 12 people there, 8 from the school, Chris my mom and I and Ella's private speech therapist. About two minutes in they inform me that they got special authorization from the state to keep Ella in the integrated preschool next year. SO RELIEVED!!! Phew! She will need to change teachers because they think she needs some change (she's been in the same class for 2 years) and I think I'm okay with that. I absolutely LOVE her teachers and paraeducator that she has now, they really push her but also love her, but I guess I see their point and I am okay with change (sort of.)

Now we move onto surgery. We are scheduled to check in for eye surgery this Thursday, March 10th, at 7am. She is having both of her eyes operated on to correct her crossing. I am nervous of course but know that she really needs it because her eyes are bad!

Speaking of March 10th, my baby boy turns 7 that day. I cannot believe my little guy will be 7, just does not seem possible. We had his birthday party this past Saturday at the bowling ally, he had 15 kids and his Mimi and Nana there, he sure had a great time!!! I have tons of pics from that that I will post later!!! For now I will just leave you with these from right before the party!

My Montage

About Me

I am a mother to two incredible children. Hunter is 8 years old and Ella Grace is 6 years old. My children are my life, my true joy. My life was turned upside down when my daughter was born and surprised us all by having Down syndrome. Since her birth I have come from sorrow and a sense of loss to greater happiness than I ever imagined and I owe it all to The Amazing Ella Grace! Contact me anytime by email fbkspeach@yahoo.com

Down Syndrome Creed

My face may be different,but my feelings the same.I laugh and I cryand take pride in my gains.I was sent here among you to teach and to loveas God in the heavenslooks down from above.To Him I'm no different,His love knows no bounds;It's those here among you, in cities and townsthat judge me by standardsthat man has imparted,but this family I've choosenwill help me get started.For I'm one of the children,so special so few,that came here to learnthe same lessons as you.That love is acceptance, it must come from the heart;we all have the same purpose,though not the same start.The Lord gave me lifeto live and embrace,and I'll do it as you do,but at my own pace.-Unknown